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Hevnw8s

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Mar 1, 2014
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17
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Lost a loved one
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US
State
AZ
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Phoenix
Hi everyone. I am new to this forum but looking forward to having some support. I lost my mom to Bulbar ALS 3 years ago. I took care of her all the way to the end and I can say...what a tremendous gift to have that time with her...but the hardest thing I have ever done. I have been experiencing some issues lately and went to the doctor. I waited to get in with the top Neurosurgeon at the best MDA hospital. I was told that he believes my symptoms are indicative of ALS and referred me to an ALS Specialist. I am waiting for them to call me and set up an appointment.

I won't preach to the choir but I am extremely sick to my stomach and terrified. I've seen it first hand, done endless research when mom was sick and now I'm being told there is a strong possibility I may have it. I don't want to be selfish and ask all of you to pray for me, but will you please? I am truly petrified.

Thank you so much.
 
I can only imagine how you must be feeling as I take my husband through bulbar onset ALS.

Have you had other family members with ALS besides your mother?

I hope you can get through the waiting time for this appointment without too much stress. I know you must be feeling such a loss of control right now.

You will find great support here, so much knowledge and help, make use of it, we all need each other!
 
I am sorry that you find yourself here. You do not have to ask for prayers you are already on my prayer list :). I think that your reaction is completely understandable. When I was diagnosed I had the same feeling.

Roick
 
I am sorry you are at this point. As someone from a FALS family I totally relate. The diagnosis point is a different experience I think when you already know every step of the journey. A research assistant once said to me she thought it was easier for us because we knew what to expect! My reaction ( unspoken) was you are crazy!
Prayers coming your way!
 
Thank you all so much. This is a journey unlike no other...whether you have the disease or caring caring for someone with it. You go through it together...always together. If any of you have any questions of me, since I cared for my mother through her entire journey of Bulbar ALS, just ask I will help if I can.

Love and gentle hugs.
 
May I ask if your mother is the only family member who has been diagnosed with ALS or have there been others?

May I also ask if you are experiencing bulbar issues and so a similar onset to your mother?

I hope you get that appointment very soon.
 
Hi Tillie.

I do not know if anyone on mom or dads side of the family had ALS. There has been lost contact with some of the siblings over the years for various reason and I have not checked, as of yet, to find out.

My symptoms are a little similar so I'm not sure if I am facing Bulbar or not. I have very visible legs twitches, left hand weakness, but the doctor said I have facial tremors when I smile and tongue tremors when I stick my tongue out. Now, I do have another Neurological disorder but my Neurosurgeon seems to feel I also have symptoms of ALS. He does not want to treat me any further until I see an ALS Specialist.

I wish I knew how long my mom had been experiencing changes before the obvious ones that brought to our attention. Mom never wanted to burden anyone so she never said anything until we started noticing the slurred speech.

Any thoughts on my doctors observations?
 
Nikki will possibly join in here as she has ALS in her family and is very knowledgable. My understanding is that one family member does not make ALS a familial or genetic problem. That's why I asked about other family members.

Did the doctor say you had clinical weakness in the hand?

The twitching tongue is an important sign, but of course no one of these symptoms on their own are enough. Is your speech slurred and do you have any swallowing problems?

I don't know how to properly say that you have to try and relax now and wait it out for the specialist appointment, except that as the wife of a PALS we had to go through a long path of many different tests and stuff before we even got someone smart enough to start us with a neurologist. The more I could stay relaxed and patient during that time, the easier that time was. It didn't change the outcome, but it did change how that time in our lives was for us. I look back now and think, we stayed so positive then and just kept on living our lives for the first 6 months or more of that time and I'm glad we had that time to be that way then. He has been rapid progression bulbar onset, so ALS has taken us on a whirlwind ride in the last 9 months or so.

Hopefully they get you an appointment fairly fast as you want to either face this monster, or cast it away with good tests results. But waiting and wondering is hard.
 
Tillie,

I understand asking about the other family members. I wish I knew. I am trying to get in touch with with immediate family on my moms side in Wyoming to see what history I can find out. As far as weakness in my hand. The doctor did not say. He did a few tests and then his demeanor was "Ok...I believe this is ALS so you need to see someone else. Hand shake and have a nice day." I was left devastated with unanswered questions.

I do have swallowing issues. It started about 7 months ago. It feels like something is caught in my throat and just sitting there. I don't choke on food or liquids but it is getting harder to swallow vitamins and pills. I remember my moms Bulbar progression and the rapid transition from solid, to mashed, to shakes and then peg tube.

I'm just hoping to have the ALS Specialist take more time to explain things and have more compassion.

Thank you for your responses. This is such a hard time.
Kim
 
Nikki,

I do have to say that I agree with you whole heartedly. I wish I did not know what was coming. When my mom was diagnosed, she did not want to know anything about the disease. She did not want to know what she was facing. That was my job since I was caring for her. I researched and read as much as I could. But now that I could be facing the same thing, I feel lost with it all. I am fighter...to a point. I hope you all understand this.

Prayers and hugs.
Kim
 
Kim I hope the answer is different. It sounds like you need more testing before a diagnosis can be made. Tillie is right as you know it takes 2 for FALS so I hope false alarm for you. There was a member here a while ago with one ALS relative and very worrisome symptoms. It turned out not to be ALS after all.
When is your appointment? I know waiting is hard. Prayers continue
 
Hi Nikki,

I'm just waiting for my Neurologist at Barrows to send my paperwork to the ALS Specialist at Barrows. Then they will call me to set up an appointment. Until then, I will breathe just as before and wait.

Thinking of you all and thank you for your support.
 
I can relate to this a little bit here. Regarding caring for your Mom and then potentially having the disease yourself. Happened to us. We have taken care of a family member from start to end. Bless! And now my spouse has the disease. It's like a bit THANK YOU for taking such great care of a loved one. Your turn for the nasty disease now.
 
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